HangingByAThread

That's great. From what I understand, there will be separate training sessions going on for medical professionals.

My whole life has changed but I try to remain positive. The only real date nights my husband and I have had in the last 6 years or so were the times that he drove me to the Cleveland Clinic or Vanderbilt or Johns Hopkins and we had to book hotels to stay for several days of testing (I can't fly - get sick for 2-3 days after). Instead of being depressed about things, I tried to find something fun I could handle for a bit in each place and pretend I was on a vacation. For instance, we went to the Rock & Roll Hall of Fame and saw the Christmas Story Movie House & Museum in Cleveland. We went to the Johnny Cash Museum when we visited Vanderbilt - and my hubby got a kick out of the Cooter's Museum and seeing the General Lee from the Dukes of Hazzard in Nashville. At Johns Hopkins we drove past the big Frank Zappa bust near a library and took pictures with me in front. This weekend I'm attending the Dysautonomia Conference in Philadelphia. I bought a ticket for myself and my husband will probably just catch up on zzzzzzzzzzzzz's in the hotel and watch movies. As warped as it sounds, I found fun during these road trips but being so ill does cause a lot of issues. Thankfully, my husband is a slob and has low standards so he's ok if the apartment looks like a bomb dropped. Now that my kids are teens, I have less responsibility so that helps but for a while it was a real strain seeing how my illness affected my kids - especially my youngest. My older one wants to be a doctor and understands what I am going through - she can actually read subtle signs when I'm ill and I can't hide anything from her. She's a big help. As for my husband and youngest, I can be in a tachycardia or confused because my blood sugar is so low that I need assistance from someone and sugar because I'm in danger, but they are just oblivious and can't tell how I'm feeling. My youngest resents that I'm "always sick" but I do the best I can. I've missed a lot of their activities, all their races when they were on a track team, field trips, etc. but I pick and choose and get to things like music performances, etc. and now that they are older they need me less. My family has wanted to move to the suburbs and buy a house but I can't because the commute would kill me and I would have to quit my job and we need my salary but I do feel guilty about that (there's a lot of crime recently where I live so my kids can't do all the things they want to do). Sometimes when I get upset and cry because I can't take it anymore my husband will say "well, at least you don't have cancer" It is well-meaning but sometimes I think that, yes, I don't have cancer, but my friends that have had cancer have suffered for a year or two and are in remission, living normal lives but I can't even make the commute home or get through my niece's wedding without nearly collapsing and causing a scene. I know my husband also feels guilty because he doesn't make enough money to support me and is always telling me to try to stay home and collect disability, but he's not realistic and we couldn't survive on that - we would have to move in with family. I'm really sorry your wife/family isn't so understanding. It must be rough for them as well, seeing us like this and not being able to do anything to really help, watching all the money spent on doctor appointments, etc.

I had an EMG on both legs some months back and it was completely negative, which really surprised me. I had been complaining for years about odd sensations in my legs, muscle spasms in all different areas that come and go and involuntary leg movements (like my whole left leg used to just jerk and actually lift off the bed when I would lay down on my back). For the last week I have an EXTREME twitch in my right eye (everyone can see it - it comes and goes but it seems that whenever I sneeze that starts it up as well) as well as a muscle twitch in my left arm, not far from my elbow (you could also see the skin moving in that spot as well). I'm at the point where I don't even bother going to the neurologist except for my yearly checkup because everything is always negative and I would just waste money (at this point, they've ruled out things like Parkinsons and MS). I feel that as soon as something is ruled out, I have a similar issue but elsewhere.

Yes!!! I notice this more after a huge meal or after a lot of carbs but at work I eat the same things for lunch every day and I can go for days without this happening and then I might have this happen 3-4 days in a row. I find that standing up helps when the palpitations are extremely bad (I have PACs and PVCs) and I do notice that standing up after eating makes me VERY lightheaded so I have to be extra careful at work after my lunch (and pop extra salt). I also notice that when this is really bad, I'm generally having other symptoms as well (I have daily symptoms but there are just clusters of days where it is impossible to function and then other days where I can pretty much "fake it" and get through the day). I eat small meals/snacks because I have reactive hypoglycemia. I noticed that even before I had my heart and POTS issues, I used to have a blood pressure issue after eating. If I ate a normal meal in a restaurant, I would be FREEZING by the time I left, goose bumps and everything, sometimes even shaking - like all the blood is pooling at my stomach to aid in digestion. I recently saw a new cardiologist and mentioned this to him as well and he said that "certain foods affect the electrical system of the heart" but he didn't go into details. I made a mental note to try to research this but haven't yet. I'm also curious as to what sets off others.

I've asked about a pacemaker but have been told no. I take Methyldopa but only in the morning (so that it doesn't worsen the night time bradycardia - in addition to the bradycardia, I often have horrible tachycardia 30-45 minutes after falling asleep...…….so my body is all over the place). I've been on countless monitors and once the monitoring company even called me at 5:00 a.m. to alert me (The call went like this "Hello, I'm sorry to wake you up so early. Can you tell me, what exactly were you doing?" to which I said "I was sleeping" and they said "you need to call your cardiologist immediately." but refused to tell me the reason. It was later that the doctor told me how low it went (I have bradycardia in the low 20s quite often, as well as heart block) but both cardiologists have said not to worry because it is only when I'm asleep that it's so low. It used to really frighten me that maybe I won't wake up one day but I try not to dwell on it because being scared to fall asleep was only making things worse. Lately, I have been taking more salt tablets before bed, thinking maybe this will help me. I was always told not to have salt at night due to being hyperadrenergic but I find the salt at night helps me feel better.

I'm excited to go - hope I can learn some tips and meet some others (I've never met anyone else who has this) but, at the same time, hoping I have the stamina to sit through it all (it is 2 days 9-4 or 5). I think the real highlight for me will be walking in with a dress and my compression stockings and for once in my life not having people stare at my legs!!

My husband is driving me to the annual conference this weekend. Is there anyone else on this board that is also attending?

I have pots (hyper) and pretty bad bradycardia when I sleep (23 beats a minute - takes me a good hour or more to get out of the bed in the morning because I have to hydrate and down 4 grams of salt to get my blood pressure up). There have been other times where I feel everything slowing down and I can just fall asleep on my feet - so I think it is bradycardia - and then that will be followed by tachycardia.

My doctor instructed me to never lie flat - keep the top of the bed inclined by about 6 inches - SOUND CRAZY BUT HELPS A LOT!

ALL the neurological problems you described your daughters having (other than the seizures) sound exactly like what I experienced BEFORE I was put on a low-dose of Methyldopa by Vanderbilt. If nothing else helps, you might want to mention this to your doctor. It works by stimulating the brain to decrease the activity of the sympathetic nervous system. Before a full workup by (several) specialists, I really thought I had something like Parkinsons or MS due to my odd neurological symptoms but it turned out I was hyperadrenergic. I also have the tendency to have low blood pressure but I just load up on salt tablets and water and that offsets the blood pressure lowering effect of the Methyldopa.

Is anyone going this year? It is July 26-28 in Philadelphia. I've never attended one but am thinking of going. The list of speakers looks interesting. https://www.dysautonomiainternational.org/page.php?ID=205

Just offering my two cents............does she mainly use non-stick pans? Wondering if it could be something in the coating that is bothering you. Also, what about food allergies? I have food allergies and can't be around my mother when she's cooking shellfish and can't be around others eating peanuts. Could something like this be contributing to your feeling ill?

Hello everyone. I was hoping you could give me some tips regarding an upcoming trip to Disney with my family this summer. I went once before - about 5 years ago - (that was before my Hyper-P.O.T.S. diagnosis) and it was pretty awful with me spending a lot of time sitting on the ground or lying flat on the carpet inside of an air-conditioned gift shop while my family waited on line or rode the rides. I’ve since gotten a handle on the day-to-day things and wear full-length compression hose, take tons of salt, and am on Methyldopa, I carry cold water, ice, do the cold towel around the neck, etc. I normally take a “seat cane” (a cane with 3 legs that folds into a seat I can sit on) when I go to a museum because I can’t stand that long but I don’t know if this is do-able there because I don’t think it would be secure on all the rides, plus it is awkward to carry and people often trip over it while I’m walking in close quarters (due to the two other legs jutting out slightly). I can’t go on many rides anyway due to balance/heart issues but do want to be able to stand on the lines with my family. My husband suggested I get a ride on scooter but I can’t sit all day either because then I get horrible pooling behind my knees …..plus I fear being yelled at when I get up out of the scooter, because other guests might think I’m faking because I look totally able-bodied. What have others done in my position? I know Disney says they are accommodating to different disabilities, but I was wondering what worked for you – and how receptive Disney is with someone with P.O.T.S. I understand I need to show up the day of and speak to someone about my condition, but I’d like to know ahead of time to make me feel more at ease. Two years ago, I was told I could be accommodated for jury duty but then they refused to let me put my feet up, made me stand a lot longer than I was able to in a hallway without seats, refused to let me get water or take bathroom breaks (and I got very ill - couldn't get myself home and had to spend the next day in bed) so I’m very nervous when people say they will accommodate because I feel most don't have a clue what I go through on a normal day, even though I look "normal". Thanks for any advice you can give me!

I have the hyper form as well and totally understand how you feel. I was treated by the Vanderbilt Autonomic Dysfunction Center in Nashville and for this subtype they recommend: "Central sympatholytics, such as clonidine (Catapres) and methyldopa (Aldomet), act on the brain to decrease sympathetic nervous system tone. Because of this, these drugs are most beneficial at stabilizing heart rate and blood pressure in patients with central hyperadrenergic POTS" I was put on low-dose methyldopa (it is the only medicine that I take) and it was a god-send!!!! It seems counterproductive because it does lower blood pressure a bit, but I'm on a low dose and I make up for it by (as per doctor's orders) loading up on salt and 96 ounces of water a day. Plus I wear full-length compression stockings from morning until shortly before bed. Before the meds I used to jump all the time at the littlest noise and was so anxious even when my brain was calm. I also sweat a lot and would shake. These symptoms came and went, sometimes my balance was affected and I had trouble walking and a lot of involuntary muscle spasms. The methyldopa quieted all this down and the side-effects are low. Another plus is that it totally did away with my chest pains and migraines (I think that's due to it opening up my blood vessels, which seems counterproductive but works). If other meds don't work, you might want to go this route.

I don't blame you for being upset. I get the "you must be having a panic attack" comment all the time as well - from first responders and in the hospital. I found what really helps is to record my episodes/EKG on my iPhone (I use AliveCor) and then bring that with me. I tell them that my electrophysiologist prescribed the device and then it usually turns into a show and tell session and they sort of start taking me seriously. So sorry you had to go through this. I hope you are feeling better.

To all my Hyper Pots friends who follow the Vanderbilt protocol: please be aware that there is currently a shortage of Methyldopa!!! (I only found out when I went to refill my prescription yesterday and the pharmacy had none.) I went into a panic and called various pharmacies to locate some (but, obviously, my insurance company would only let me have a certain amount). The thought of living life without this life-changing drug and going back to being nearly disabled and having non-stop migraines, stabbing chest pain and adrenaline surges is something I don’t want to even think about so I’m praying that this shortage is just short-lived and not an indication of this medicine going off the market. I’m not sure what is going on yet but I looked on line and found out some info about the 3 different makers of this drug: (1) Accord has “temporarily discontinued” making all tablets; (2) Teva says their 500 mg are “temporarily unavailable with no release date”; and (3) Mylan says 250mg and 500mg are “on backorder” with a release date of late February for the 250mg and late February/early March for the 500mg. Does anyone have any further information? Is there anything that, collectively, Dinet/we could do to put pressure on these companies to make sure we have access to our drugs? I'm so sick with worry over this......

I haven't been on this board in a long time but to answer your question, Jessica, I'm on Methyldopa and YES, it definitely helps calm anxiety. I have Hyper Pots and used to sweat like crazy, jump at loud noises and have exaggerated startle responses. Methyldopa is a centrally acting sympatholytic and decreases all those symptoms. Unfortunately, there seems to be a shortage of the drug now. I'm going to post about this.

Vanderbilt likes to prescribe Methyldopa for Hyper POTS. It did away with my anxiety (plus it is really inexpensive and I've had no side effects).

I think one of the biggest misconceptions about POTS is that doctors think you need to actually pass out to have it so patients (myself included) think we must not have it. I may not pass out but I get pre-syncope quite often as I'm sure many others do as well. shawna, I can relate to your tachycardia episodes. First of all, I never have tachycardia when I'm stressed but rather when I'm calm, when I'm daydreaming or sitting quietly without a care in the world. Secondly, I get the worst tachycardia episodes during my sleep for reasons nobody has been able to explain to me. however, what I find the strangest is that it doesn't matter what time I go to bed.....it can be actually going to sleep or just taking a nap but I only have ever had the sleeping tachycardia 30-60 minutes into my sleep, never any other time during the night. I used to think maybe my heart rate is too low but all monitoring has shown that I get the lowest heart rates (20 something beats per minute) around 4 or 5 a.m. So I guess that doesn't explain it. I had a sleep study recently but, of course, I really wasn't able to fall asleep so that was useless. I have always been advised to have a ton of salt but nobody seems to recommend it at bed time but a couple of months ago I decided I would have very salty late night snacks and pop a salt tablet. I'm not sure if it is coincidence or what but I've had less sleeping tachycardia and the severity and length of the episodes has decreased so that I didn't need to wake up my husband or call 911. My endocrinologist has also advised me to lie still when I have one of them and not get up (I usually feel like I will physically die if I don't sit up because I shake so bad but I'm trying to listen to him and see if that helps with the heart rate not shooting up to the 170s). So far I've only had smaller episodes of short duration the last month or so so I haven't really had to try this out. I also was told to apply ice to my neck and thus helps. I go to bed with a couple of really cold cans of seltzer in the night stand and the remote control for the air conditioner within arm's reach and find that helps a bit. I've also noticed that sometimes it feels like the tachycardia is a positional thing and some start when I roll over. I also can only sleep on my right side or a little bit on my back if I'm really propped up. If I roll onto my stomach all **** breaks loose and I feel like someone is inflating my head with a bicycle pump. If I lie on my left side I can feel every heart beat and get ringing/squeaking in my ears so I have a ton of pillows to try to keep me from moving around. You might also want to put the top of your bed on 6 inch riders like is advised by athe Cleveland Clinic. I sleep much better this way and have less episodes of waking but it is important that the entire bed is in an angle, you can't just prop yourself up with pillows.

If I’m not mistaken I thought I heard that Norepinephrine levels can rise if you are scared to death when having your blood drawn so I don’t know how accurate this test would be for you if you find getting blood drawn so difficult. When I had my tilt table tests an IV was placed into my arms beforehand – sometimes it was shortly before hand and another time it was hours before (due to the time I had to wait for the test). If you can tolerate getting an IV put in, would it be possible to ask that the IV be placed first thing in the morning and then you sit around and have your test performed hours later, after you might have a chance to calm down a bit? I remember specifically having a hemodynamic echo and not only was it the norm to inject a radioactive tracer into the IV in certain intervals, but every once in a while blood was drawn from the IV line as well - this way the test would be accurate (since many patients flinch or have a vasovagal response from needles/seeing blood.

Hi Shawna, I’m so sorry you are going through this. I’m a mom, close to your age and live on the East Coast as well. I know how hard it can be to go through this and still have kids to take care of. You mentioned that you had testing but all that showed was sinus tachycardia. What testing did you have? Any autonomic testing or just cardiac testing? I assume your doctor was able to catch an episode on a monitor? I get a ton of sinus tachycardia but all my echos and stress tests have always been fine – which is a good thing but it doesn’t solve the problem of totally stopping the tachycardia. Do you know how fast your episodes are? What about your blood pressure………..is it normally high or low or does it fluctuate? How about when you first wake up? Have you tried to do the “poor man’s” tilt table test (blood pressure/heart rate readings lying down, then standing up for 1, 3, 5, 10 minutes, etc.)? Does this only happen to you when you are in bed or do you have episodes during the day as well?

I have it and love it! I got my first one (an earlier version) about 5 or so years ago when my electrophysiologist prescribed it for me (as a way to save money on costly 30-day event monitoring because I had to be monitored so many times). At that time it wasn’t advertised and was only available by prescription. Recently it broke (I dropped it a million times) so I just bought the new version. It is great because it records and saves EKGs that can be read by my doctor when I go to see him (they can be emailed to anyone as well as printed out). (Often I don't have symptoms in front of doctors and all my EKGs in a doctor's office are always normal.) Besides the Dystautonomia/Orthostatic Intolerance/Inappropriate Sinus Tachycardia/POTS symptoms, I had to have an ablation in the past for a totally unrelated electrical problem (that has since been 100% cured) and Kardia was instrumental in confirming that, yes, I no longer have this issue. The issue that I had years ago was actually very hard to diagnose and nobody took me seriously for quite some time (everyone kept saying I was nervous and the event monitors didn't show anything because the issue would only happen once a month or so). At that time I went from doctor to doctor and once I was even rushed to the hospital in an ambulance after nearly collapsing at work. Looking back, if I would have had the Kardia back in 2001, I would have been taken seriously and it would have saved me a lot of time, money and worry. There have been multiple times where I’ve had to call EMS because I had a major episode of immobilizing tachycardia (like on public transportation) and when they first arrive they usually tell me to “calm down” and ask if I have “anxiety” (because I do look like a nut and can’t stop shaking or chattering my teeth by the time they get there) but then I whip out my iphone and show them the EKG recordings and they all take me seriously because I have accurate readings of what’s going on. If they take me to the hospital, I whip out my phone and show them as well. I took my readings to Cleveland and Vanderbilt a couple of years ago as well and that helped not only with the diagnosis but with fine-tuning the medications that were recommended for me. I took a recording recently because I just didn’t feel right and couldn’t put it into words…………I was extremely tired and felt like my heart was suddenly skipping beats while sitting down so rather than waiting until I see my doctor next month, I sent the recording to one of the Kardia techs who read it and sent back a report saying “Sinus Bradycardia, PVC(s), Non-Conducted PAC(s), PAC(s)” so now I have something concrete I can show my doctor about how my issues are progressing and changing over the years. Also, if I’m not mistaken, it is supposed to flag A-fib and that is important to me because my grandparents had it and both of my parents so I do fear that I may one day develop this as well and this gives me peace of mind so I don’t have to keep running to the doctor and fearing I’m going to die. I really would recommend it and I would assume that you could put in for reimbursement for it through a health savings account, if you have one.

I forgot to ask, are you being seen in the Dysautonomia Clunic or by a "regular" cardiologist?

I was seen at Cleveland as well. I was told to expect to spend three days there and after I saw the dysautonomia specialist he then scheduled all the tests. Prior to my visit I chatted on line with a nurse who was also able to arrange for me to see a neurologist there. I had a lot of testing and even saw a vein specialist (I had a phlebo test, tilt table, stress test with echo, QSART, and a hemodynamic blood volume test with radioactive dye). The neurologist also did some blood work. All this actually did take 3 days.

I swear by my Alivecor Kardia monitor. It costs about $125 and you no longer need a prescription (mine was recommended by my electrophysiologist). It is a case that fits on the back of your smartphone and then you install the app on your phone. You can record and store tons of high quality EKGs that you can then email to your doctor or print out. The app also flags abnormal heart rhythms and if you really need reassurance, you can email a reading to an alivecor tech who can interpret it (you do have to pay for that).